Sunday, November 27, 2011

Family Photoshoots

This weekend I took pictures of my sisters' families for their Christmas cards.  I promised I wouldn't post the pictures all over Facebook or the blog, but I just had to share a few :)

my sister Joan and family

my sister Maureen and family

My dad informed us a couple of weeks ago that he wouldn't be spending Thanksgiving with us because he was spending it in Missouri with his good friends. Today, my sister received this picture via email.  Looks like my dad is having a pretty good time, wouldn't you say? :)

Have a great week my friends!

Sunday, November 20, 2011

Respite Weekend

Last summer we scheduled Jack for Ryan House weekends through the end of the year.  This weekend was one of his Ryan House weekends, so we took advantage of the opportunity and headed up to Sedona.  Sedona is one of the most beautiful places there is and I realized this weekend that I really need to be better at taking advantage of having such a beautiful and peaceful place practically in my own backyard.  I always worry when Jack is at Ryan House and we are far away, but when we picked him up this afternoon he look good and he was happy.  I usually call a couple of times to check in on him, but also realize that they aren't ever going to tell me anything other than "he is doing good" when I call, so it's not really anymore reassuring to call and check on him than to not.  If there really is a problem, they have my phone number and they will call, right?!

Ryan House has become so popular that they are now limiting the number of weekends each family can have per year to three.  Three.  That's a bummer because who needs respite during the week?  Oh well, three weekends a year are better then none.

I dragged Hilary out of the house and made her go with us.  She hung out at the hotel on Saturday and Mark, Eric and I went hiking.  We also drove into Flagstaff after our hike and met Mary for lunch.  Today, Mark and Hilary went to "Out of Africa" wild animal park and Eric and I walked around Sedona and enjoyed eating, shopping and people watching.  It was a great weekend all the way around.  

Below are a few pictures from our hike on Saturday through beautiful Oak Creek Canyon.  The trail we took is about 3.5 miles into the canyon for a total of about 7 miles roundtrip.  We turned around at about the 2.5 mile mark.  There are a lot of places along the trail where you have to cross the creek.  Our walking sticks came in handy helping us keep our balance when we walked on the rocks across the creek. 

It's my hope to one day gather up a group of my fellow trach moms and somehow get them all to Arizona for a weekend retreat in Sedona. Wouldn't that be awesome?  Who's in?

Thursday, November 10, 2011

TouchStones Update

Thank you all for the birthday wishes for Jack and for watching his video.  It's still so hard to believe that Jack is 13 years old!  I can clearly remember Jack's first birthday - he was so sick. He was miserable, I was in tears and there was little energy for any celebration. We have come so far in thirteen years. While life is nothing like I expected or wanted (and still don't want), I think we've done a fairly good job of learning to "dance in the rain".   I'm so thankful for all the friends I've met along the way who are dancing right along with us.


On a different note, there are some exciting things going on with the TouchStones program.  I don't think that I've yet shared that we now have Children's Hospital of Orange County on board thanks to the persistence of my dear friend Sarah (Keturah's mom for those on the trach board).  CHOC is going to roll out the program hospital wide for all of its physicians.  They are putting together their own video using my "Dear Future Physician" letter as the foundation for what they want to say.  I've been invited to be a part of the video as well.  Exciting stuff!

I also recently exchanged emails with one of Jack's former PICU docs who was the physician who supported the Touchstones program from the beginning.  She was the one who gave me the confidence to move forward with the idea.  She was at Johns Hopkins at the time, but she is now on staff at Vanderbilt Medical School and Children's Hospital.  She shared with me that she has introduced the TouchStones program into a "Healer's Art" class she teaches at the medical school and she hands out the pocket stones on the last day of class.

It warms my heart to know that the program is being used at some of the top childrens' hospitals in the country.  Thank you St. Louis Children's Hospital for hooking me up with amazing doctors and thank you for hooking me up with amazing parents.

Although I would love to have more hospitals on board, I recognize that we are making a difference one hospital at a time.  If we can change the way one physician treats his or her patients and families (and I believe we have), then we have succeeded.  I am a firm believer in making a difference one "starfish" at a time.  I shared the "Starfish Story" a couple of years ago, and I share it again to remind you that we can ALL make a difference one person at a time.



Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

Friday, November 04, 2011

Happy 13th Birthday Jack!

Jack is 13 years old today. A teenager! Thirteen years ago I could never have imagined the journey that Jack and I would travel.  Even today, I stand back and still can’t quite wrap my head around where we started and where we are today. Who would have thought?  In the beginning, not many of us, that’s for sure.

Jack is loved, Jack is happy and Jack doesn’t know any different.  Today, we celebrate all of those things.

Rather than share a bunch of superfluous words, I share a song that perfectly expresses how I feel thirteen years into this journey.  

Happy Birthday Jack – we love you to the moon and back!

Wednesday, November 02, 2011

Sneak Peek

In the video I am putting together for Jack's birthday, you will see a lot of pictures from a professional photoshoot that I had done in September.  The person who took Mary's senior portraits (Doni) wasn't available because she is taking time off for her new baby.  The person she suggested did a great job - although, I will  say I don't think she's as good as Doni.  Here are some pictures from the shoot - a preview of what you'll see in the video.